Hey all-
so it has been what seems like forever since I have posted here, it's been an insane semester; taking 18 credits most likely wasn't the brightest thing to do, but as of midterms I was rocking a 4.0gpa so I'm keeping my fingers,eyes, and toes crossed that I can keep something close to that up for the next 4 weeks left.

However, I think that is about the only thing I feel like I can rave about lately which is a big bummer. This rollercoaster ride I have been having with steroids is beyond painful both physically and mentally. I understand many people have had it much worse but I feel like for what my case is/ was everything I'm still going through is a bit extreme. To sum up the history briefly I had a 6-9 month period of going between 20-40mg's daily of prednisone then for another 6 months I was tapered to as low as 5mg a day on prednisone when severe withdrawal happened. Fastforward to seeing an endocrinologist to control the taper down, I was switched to cortef, a much lower degree of steroid meant only to serve as a taper, not therapy. Now, today, I am at my lowest I have ever been of steroid dosage of 7.5mg of cortef daily about 2 1/2 years after introducing steroids into my system. Well, I still have extreme withdrawals to where 8mg of zofran barely assuages the naseua. It has been clearly determined through many other tests and doctors that this is all attributed to the steroids; nothing more. I recently had bloodwork that confirmed my cortisol levels were dangerously low, this after being at this dose for nearly 2 1/2 months when after 2 weeks at this dosage levels were ok. My endocrinologist finally admited to me that he was stumped and refered me to another doctors at Yale, so whenever I get an appointment there, hopefully I get some answers. I also just took an ACTH test and I was wondering if anyone else has gotten to this point and if the results show my adrenal glands are atrophed (sp?) where does that leave me?

Another thing that I suppose is less serious and admittedly shallow is after speaking with my surgeon and other doctors they all assured me that what surgery and steroids have done to my body and stomach that I could easily, and especially more importantly with my insurance get plastic surgery to fix all the literal deformities that are plaguing not only my body but self esteem. On top of that as well, it has actually started to cause extreme discomfort, borderline pain because it is so bulged out on one side and I can't apply pressure on it, such as sleeping on that side. (p.s. I've had it looked at, not a hernia.) Well, I just had a consult with a plastic surgeon after sitting in the waiting room for an hour and a half past my supposed appointment time, I was given about 5 minutes of assessment and he determined because the work I would need would encompass too many "little" procedures to be done all at once that he didn't feel like trying to deal with my insurance for approval because he didn't know what he would call it to them. Needless to say I had an emotional breakdown after he left the room because quite frankly neither I nor my parents are in the financial situation to be able to deal with someone that would require out of pocket payment. To add insult to injury he also smugly added that the deformities created by steroids and surgery will never go away and if not only worsen with time.

I guess I'm just having very disheartening events lately and it keeps lowering my spirit. Don't get me wrong I am very greatful and happy that from a pouch standpoint, the plumbing is fabulous but it's hard to enjoy. I'm going to be 21 in about a month and even finding clothes that properly fit me with comfort is hard, let alone the thought of what summer is going to do. Little things do not help either when you put into consideration like I was dumped by a boyfriend of 2 years for being sick and haven't dated since then a year ago(no worries folks I know those type of people suck and aren't worth it and karma will bite them in the tush) Also best friends moved cross country permanently. When all your former close support systems outside of family who don't have to tell you that you're "pretty" and stuff because they're not family, are gone, you begin to lose hope after a consultation such as this one.
ok I'm done and thanks to anyone who actually read this far...I feel a bit dramatic but needed to vent to someone other than my mom because I feel bad, I think I make her inadvertantly feel guilty that she can't afford to help me and that is the farthest thing ever I want her to feel like.

**Here's to this week hopefully having better news and better outcomes!**

-taryn

You know it really breaks my heart to read of young people like yourself going through this stuff. It's hard enough for someone my age so I really am in awe when someone as young as youself can be so adult and candid about this.

I really don't have any medical advice to give you, though I'm sure there will be others along pretty soon who can. I just wanted to say vent away! You deserve your pity party and can come here anytime you need to throw another one! You won't be short of gatecrashers as there is nowhere else on the planet where you will get 100% support and understanding.

Hang in there hun, we're all here for you.

Take care

Shell

Hi Taryn,
I'm so sorry to hear about what a cruddy time you're going through. I'm afraid I don't have much advice on the cortisone as the longest I was on it was just a few months. I swelled up so fast and so badly that I insisted on tapering off virtually straight away. I think I started on 80 mgs and tapered off over a couple of months. the second time I was on it I started on 60 mgs and only had that for about a week before starting tapering off. So from mid-June to late August I'd tapered off completely. So I don't have advice on long-term use. But I do feel that the plastic surgeon behaved like a complete swine. Reminds me of the woman who did my step 1. Your plastic surgeon doesn't sound like he appreciates at all that there are other poeple out there who you can go to. I'd definitely go for a second opinion. Maybe you can search these boards for recommendations for someone in your area (if you haven't already)? I think he has behaved arrogantly and heartlessly, and I'd look for someone else who can actually be bothered to take the time to find the right medical "box" to place this in so your insurance covers it. (I sometimes wonder whether some doctors have ever even heard of the Hippocratic oath?!) After my step 1 I almost didn't make it. My surgeon kept me waiting an hour for my scheduled appointment, then told me she didn't have time to answer any questions! Jjust gave me a quick check and started to leave. I said - "Hold on! I've got to extend my sick leave, get a prescription for sleeping tablets, get a referral to physiotherapy etc. Can you just hang on a second and write these things out!?" And she sat down, wrote the papers out quickly, then without even looking at me said: "So, you don't feel able to go back to work?" I was lying on a bed since I was too weak to walk and the nurses had to wheel me in to see her, so I couldn't believe she was even asking such a stupid question. My husband's jaw just dropped. I looked at her, she looked at me, and I said: "Well, what do you reackon?!" Grrr!!! My GI doc was furious with her when I contacted him later and asked for help and he saw what a state I was in. Go to another plastic surgeon: there are no doubt better ones out there who see the whole patient, not just a piece of meat to slice into. Good luck!
ps: I'm with Shell: rant as much as you want! Lots of shoulders to cry on here

This message has been edited. Last edited by: Soph,

Definitely do not feel bad about venting, you have been through so much! Everyone needs a little "pity party" every now and again.

I don't really have too much medical advice for you either, other than to say that I had my ostomy scar revised by a plastic surgeon 2 yrs ago. I don't really think it was technically considered a hernia, but that is what the doc called it to get my ins company to pay for it. My stomach had a large bulge on the right side that could be seen through clothes, and now the whole area looks 100% better. You might have different surgical issues that need to be considered, but a consultation at another plastic surgeon may be a good idea. I had my surgery done in NYC by a wonderful doctor, if you would like his name/#, email me.

Take care,
Dana

Well, I hope that it at least helped to let it all spill out. Sometimes just unloading what you are holding in will brighten your day. Of course, it doesn't solve the problems you are facing, but I am sure you would not expect that. It seems you have a very good handle on what you are dealing with and you also seem to have a lot of insight as you how and why you are reacting in the way that you are. For that, I give you kudos. There aren't too many young people (or mature people either) who can really sort out their issues as well as you have been able to (and to pull a 4.0GPA with 18 units to boot!)

I can imagine the crushing blow of having the plastic surgeon tell you he could not help you, but I suppose it is better than him stringing you along, only to find he could not figure out how to present your case to the insurance company. Still, a softer let down would have been nice... I agree, a second opinion is in order, just wait until the sting is gone from the first one.

I am not sure you want to hear the next thing I am going to say, but adrenal atrophy may be permanent and you may require lifelong cortisone replacement. The testing you are talking about will determine if it is your pituitary or adrenal cortex glands that are underperforming. If it turns out this is permanent, at least you can quit trying to taper off the steroids.

I am sorry you are having to go through this prolonged aggravation. Please, come here to unload whenever you wish.

Jan

Thanks everyone. I'm def going to get a second opinion. I think aside from the plastic surgeon's obvious lack of bedside manner there were a few other things that contributed to my meltdown. I had zero preparation for complete denial since every other medical professional I spoke with alluded to the complete opposite. Also, my summer last year was ruined due to being in and out of the hospital with surgeries after a quick descion to get gutted.
I think I was hoping that with being able to get the surgery this summer my days of being sliced and diced would be completely over and I wouldn't have to worry about having something like half a volleyball poofing out of my left side along with 2 belly buttons that look like they're permanantly winking at you.
That in conjunction with the possibilty that I'll have to deal with a 3rd summer staying indoors for fear of getting sun poisioning (side effect for me when I'm on ANY dose of steroids....oyyyy
Although the term normal is all relative I was hoping for some type of fun summer before I'm thrown into the real world with graduating next year and working. I am a firm believer though that everything happens for a reason, so we'll have to see.
I called my endocrinologist today and they said that they can't get back to me about results from the ACTH test for another week or so. So I'm going to cross my fingers and hope the old expression is true "bad news travels fast while good news travels slow" Since over a week for blood test results seems somewhat slow to me...that said STERIODS ARE EVIL and thanks again everyone!

-taryn